Our Sweet Angel

Our Sweet Angel

Sunday, December 25, 2011

Merry Christmas and Happy Birthday

Wow....time has just flown by over the past few weeks.  Without all of the friends and family who have been visiting us since Carmen's diagnoses, we have no time for blogging right now.  Auntie Deb is arriving in two weeks so life may get back to normal a bit.

After the entire family arrived in Kona on December 3rd, things have been a bit of a whirlwind of settling into our new home, moving, getting ready for the holiday's and the continuation of trips to Oahu for Carmen.

Today is day 26 of Interim Maintenence Phase II, Carmen's 5th round of Chemo.  Carmen and Heather go back to Oahu on December 29th for another lumbar puncture with Chemo.  Our TLP is doing really, really well and is a shining star throughout this big life change for us.  She has great energy and her numbers have been good.

We will do our best to post a proper update over the next week.  Please check back soon.

In the meantime, Merry Christmas and Happy Holiday's to all of you.   We wish you much love.

Also....a big, Christmas Day - Happy Birthday for Heather!

Below are a collection of images and videos that will give you a quick snap shot of what has been going on with Team White.


video

Carmen just walked up on stage at the Four Seasons and started dancing hula in front of a full restaurant of people


A new home on the Big Island.   Same naked boy running through sprinkler.


Carmen in Oahu at the Royal Hawaiian for another visit to the PAU

 

Beautiful "pink" Christmas Tree at the Pink Hotel, Royal Hawaiian


 

In the "LIMO" on the way to see the Nutcracker Ballet.  Making the best of the trip to Oahu with a Girls Day!!!!


After the ballet.  A magical moment.


 Mommy and Carmen, after the show.

 


A big Christmas Hug for Tucker




 Carmen and Trevor's Tree.  Carmen places the last decoration before the tree collapses from the sheer weight of tinsel.



  Santa visits the Four Seasons just in time to hear the "list"

Santa brought a drum set for Carmen and Trevor.  "T Bone" jumped on the drums like a pro!!!


 Beautiful Birthday Mommy



Visiting friends for Christmas Dinner.  Carmen receives...the "best Christmas present EVER!!!!"




 Puuuurrrrrrr, Puuurrrrrr

With Love and Aloha,
Team White

Sunday, November 13, 2011

A "White Night" - Service Above Self

What would it take to change the world? The members and friends of the Rotary Club of Huntsville, Ontario believe it starts with a commitment to Service Above Self.

This credo was brought to life as the members of this wonderful club held a benefit in support of our tough little princess, Carmen Leolani White.

"WHITE NIGHT," as the evening was appropriately named, was held at the home of President Gord and Fran Mitchell.

A picture board of photos of Carmen welcomed members as they arrived.   The Mitchell's home was welcoming and the food was amazing. Fran is a wonderful cook, and everyone was also treated to Fran's famous creme puffs.

Over 60 Rotarians and family attended this wonderful event.

Bill Sibeon spoke to the group, not only about Carmen but about his grandson who is about one year ahead of Carmen in his treatments for ALL. President Gord encouraged people to be generous in their support both emotionally and financially.  Grandpa Cam was able to bring people up to date on Carmen's treatment so far, and what lies ahead.

My parents, Barb and Cam, have been part of the the Rotary Club of Huntsville for many years.  As children of Rotarian's my sisters, Kate and Julia and myself have had the priviledge of hearing all the great stories of community support that this little club has delivered to the town of Huntsville year after year.  Some of the stories are inspiring, some of them are funny, some are even a little odd but all of the stories are about giving more than ones self.

Rotary is a family, and even though my family - way out here in Hawaii - have not had the honor of meeting most of you, never before have we been more aware of the love and support you have offered to our family.

You may be a small club in Hunstville, Ontario but you are mighty and you have made a world of difference in one little girls future.

We thank you from the bottom of our hearts.

Team White

(Please see images from the White Night below)

*****

I would also like to take this opportunity to share a beautiful note from another angel, Kaitlin Hutton, that she sent to Carmen in response to our last post;

Hi Carmen! I just wanted to let you know that you are a beautiful little girl and I think of you all the time. I love that you always have a smile on your face and Trevor, I think of you just as much! I wanted to let your family know that in September I cut off 14 inches of hair and donated it to kids just like you! I also want to say that I have raised over another $300 just for you from the bookmarks I have been selling. I hope that one day I will be able to finally meet you in person. Even though we've never met, you are very special to me and I always tell people that you are my idol. I love you so much and think of you often.
Hugs and butterfly kisses,
Kaitlin Hutton


IMAGES



The mighty little club from Huntsville, Ontario



Beautiful photo screen created by Fran


Amazing quilt made by Karen Pasel


President Gord with Mom and Dad providing them with over $4,000 of support for our
Carmen Leolani White


Thursday, October 27, 2011

The "Toughest" Little Princess - Laughter is the best Therapy

We had to share these amazing photo's of Carmen and Trevor.

These images made my heart skip a beat.      

Auntie Aly has been showing off her Face Painting talents.....which is surpassing Daddy's.

Live, Love, Laugh



Carmen and Trevor - Butterful Kisses


Beautiful

Tuesday, October 25, 2011

Jacquie, Cici and Nani....thank you


Turning 40 is such a wonderful milestone in our lives...

It's the beginning of the best for some, some feel over the hill.  We are all having babies a little older these days.  Most of my best mommy friends are 40 or have turned since having our babies 4 1/2 years ago.  I felt turning 40 last year was the best time of my life.  I like and know who I am more than I ever have.  I love my family and friends more than I ever have.

40's are truly FABULOUS!  

And from my "wiser" friends I know it only gets better from there...

Childhood friends Cici, Jacquie and Nani just celebrated their BIG 40 on Oahu where they grew up together.  Jacquie has been doing healing touch with Carmen right since her diagnosis.  I met Jacquie through Cici who's little girl Abby goes to preschool with Carmen and Trevor.  Cici and Marau, Carmen's teacher organized the fundraiser bracelets for Carmen.  

"Smile and be happy, I love Carmen"

On their birthday invite they wrote;

"Your friendship is the best present; however if you would like to give a gift please consider a card of encouragement or a donation in our calabash for our dear four-year-old friend Carmen (http://carmenleolaniwhite.blogspot.com) who was diagnosed with leukemia in May."

I have never even met Nani, but I know these three women are all beautiful, stronger than steel and their charity and humanity is endless.  I am again so blown away by your kindness toward our family and do not know what we would do without you.

Mahalo Nui Loa
Team White








Sunday, October 23, 2011

It's only hair...

Aloha,

It has been a long time since our last post.  Many things have changed.  

I have been on the Big Island since September 25th and have been at the new job for almost a month.

Things are going great.  I am loving the new job - and - missing the family terribly.  

Team White was back together last weekend, when I traveled to Kauai for a few days.   Heather and I know this will all be great in the long run....but.....it is extremely difficult being apart.  Especially....with what is going on with Carmen.

Auntie Aly has been a tremendous help to our family and I do not know how we could be doing this without her.  We thank you from the bottom of our hearts and will be forever grateful of this time you are spending with us.  You will ALWAYS have a place to stay with us!

Carmen began Delayed Intensification on October 3, 2011 (day 1).  The doctors readied us it would be as intense as her very first round of Chemotherapy which was called "Induction."  They said this would be very difficult on our family and on Carmen.  And warned us, "If she still has any hair, it will go with this round."

Carmen is staying vigilant in her fight.   We mentioned in earlier posts what was in store for Carmen's body during this phase.   The only way for us to really share the reality of these chemical treatments is to list you her protocol, below;

Dexamethasome - Days 1-7 & 15-21
VinCRIStine - Days 1, 8, & 15
Doxorubicin - Days 1, 8,  & 15
Pegaspargase - Day 4
Cyclophosphamide - Day 29
Thioguanine - Days 29-42
Cytarabine - Days 29-32 & 36-39
Intrathecal Methotrexate - Days 1 & 29

She is also on an anti-fungal for thrush and an antibiotic to protect her from pneumonia.

October 24th is treatment day 22.  There is 56 days total so days 39-56 are essentially "rest" days.

Carmen and Heather were on Oahu 4 days the first two weeks of October.  They are home for this coming week and Carmen is finished with the steroid...finally!

I know the names of these drugs do not mean much to you but they are easy to research on-line, allowing you to fully understand what this beautiful, little four year old is going through.  It is enough to bring all of us to our knees.

It is next to impossible for me to try to explain to you what it was like to Skype with my beautiful daughter today and see her with chubby cheaks, tired and losing her hair is clumps.  This is the same TLP who was running, jumping and dancing only a few weeks ago.  I know the doctors and chemotherapy are curing Carmen but the whole things seems incredibly cruel and unfair.  Heather anticipates that Carmen will lose all of her hair by the end of next week.

As always, Carmen finds the will and energy to give her Daddy a big smile, little laugh and showing that little sparkle in her eye.  

And to Heather....my rock-solid soul mate.  Always giving your best.  Keeping Carmen and Trevor smiling and having fun.  Your ability to keep it together through all this is truly inspiring.   

We decided to make this move to the Big Island for the long term benefit of Team White.   Heather and I, know we made the right decision but being apart from family during this time sure seems wrong right now.

Okay.....so there is great news to share too.

Trevor is the same little fire cracker as always...keeping everyone busy and laughing.  He is going to school, while Carmen stays home, enjoying every minute with Auntie Teacher and the gang.

Carmen's numbers are staying high, despite what the doctors warned.   Heather is highly optomistic that Carmen will clear day 29 and stay on track to complete this phase on time.

Carmen and Heather will go to Oahu 8 out of 11 days between Nov 1st-11th.  Aly will be holding down the fort and caring for Trevor, Roxy and the house.

Carmen, Heather and I will be coming home on November 4th, with Auntie Julia and Uncle Scott who are coming on their honeymoon from Ontario.   Then I will be joining Heather and Carmen in Oahu for one of their extended visits to the PAU on November 8th.

We are looking forward to welcoming Auntie Judy and Uncle Chris mid November.

Grandma White still needs to send us pictures but we would like to thank the Rotary Club of Huntsville Ontario for their generosity and support.

And....to all of you.....Mahalo for your love and friendship.

Love Team White

A few images images


Auntie Aly's 25th Birthday Celebration!


Carmen's favorite visitor in the PAU



Carmen at the tail end of her steroids.





Art fun outside!










The nurses and doctors can't believe how long Carmen held on to her hair...
Some people have asked how she is reacting to the hair falling out and she does not really know.  I am not reacting to it but am telling her, "Your hair is coming out to make room for new-improved hair."  "Like when you loose your teeth and get new ones!"
I have been telling her since June she was probably going to loose her hair, we do not have very many mirrors around so I do not think she really notices or cares which is great!  It's for sure harder on Mommy and Daddy.









Last photo of this particular pony tail...there will be more!


 An amazing book Carmen was the creative director of and daddy put it on paper for her












 Megan and Kaitlin from Ontario are now making lovely book mark to raise money for Carmen.  These young women are truly filling up their karma basket! 

We love you!!

Sunday, September 25, 2011

A New Chapter Begins

Tomorrow officially marks the beginning of a new chapter for Team White.   I leave for the Island of Hawaii to begin my new position with the Four Seasons Resort Hualalai.

Heather, Carmen and Trevor will remain on Kauai until December 1st.  I will be traveling back to Kauai at least three times before the full move.

The last three weeks have been an incredible blessing.  I have been off work, in transition, for the entire time.   This has also been a down period in Carmen's treatment.  We have been able to spend the last three weeks just having fun and enjoying this wonderful island of Kauai before we leave for the Island of Hawaii.

There have been a few going away parties to say farewell to our extended ohana here on Kauai.

We spent a night at the Grand Hyatt Resort, enjoying their amazing pools and Carmen was able to ride the "big girl" water slide.  

The highlight of the three weeks was spending two nights at this amazing place on Kauai called Waimea Plantation Cottages.   The entire resort is made up of several rustic seaside cottages that used to be homes for plantation workers for the Sugar Cane industry.  It was so quiet and peaceful, full of laughs and fun.

The first week hiatus in Carmen's treatment has been amazing.  She has completely bounced back to her old self.  Quick to laugh and full of endless energy.  Her numbers have all been terrific and Carmen is as strong as ever.  All of this is perfect timing to prepare Carmen for the beginning of her next phase of treatment on October 3rd called Delayed Intensification, which is expected to be difficult on Carmen.  The Doctors refer to this phase as a "re-shock" to Carmen's system to emulated the first 30 days of Chemotherapy.   The leukemia cells are smart and will adapt to the chemotherapy treatment, therefore the theory behind Delayed Intensification is to outsmart the Leukemia Cells and blast them into submission.  

It is unbelievably painful for Heather and I to see our little daughter back to her old self but knowing what is about to happen to her over the next 56 days.

So far, the Tough Little Princess has fought through this with courage and we are confident that she will do the same for this phase.

Of course it is painful knowing that I will not be here for Heather for the majority of this difficult phase but we are looking forward to welcome several visitors over the next few months.   Cousin Aly arrives on September 29th and staying to November 20th.  Julia and Scott arrive for their honeymoon on November 4th and we just got news that Uncle Chris and Aunt Judy arrive on November 13th and will be staying to December 10th.  

Tonight we were having a nice dinner before the trip to the airport tomorrow.  Carmen disappeared from the table and returned a few minutes later.  In the palm of her hand was a little Angel coin that her Auntie Debbie gave to Carmen to watch over her.  As the incredible giving and beautiful little girl that she is, Carmen opened her hand, looked up at me and said, "Daddy....here....take this angel.  She will watch over you when you are on the big island and I will always be around you".  Then she grabbed my cheeks and gave me a big kiss and hug, saying, "Daddy...good luck.....I love you".    Oh my.....not a dry eye in the house when she said it or now that I write this.

We feel so blessed and fortunate to have such incredible support from our loved ones.  Thank you to all.





Images and Videos


video



Daddy sunbeams!



Wow!  A photograph of mommy!



Go for it Trevor!!!!  Such a funny guy.



Our seaside cottage at the Waimea Plantation Cottage.


The Kiddo's at the Waimea "Candyland" - as they heard it.  


Seeing a natural wonder and sad there was no Candy.  "Where is Candyland"


Waimea Canyon, Kauai


Cheeeese


So happy!


Having fun at Jo Jo's Shave Ice


Sharing...


Shaka!!


Shave Ice at Jo Jo's


A Kauai institution


 Beach Dancing


Tossing it back


Daddy....I have a crabbie in my mask


Living the life of leisure